Bad news again

tvman

Just wanted to say what everyone one here has already.  I am sorry that you are feeling so fed up. There is nothing I can say to make you feel better but I am sending you a warm hug.

I am envious of the beautiful scenery North of the border. we have some lovely places in the South East but Scotland and N.I trumps that on every level no matter the weather.

Hi guys

A big thank you from me to all of you, I have reached a point where I feel vulnerable and I am annoyed that I haven't achieved as much in my vegetable plot as I should have by now mainly because of my shoulder pains. Today I had a physio appointment at my local small hospital, the first appointment. I was asked loads of questions about my health, I think the bloke's pen was going to run dry. The painful shoulder is due to damaged rotator cuff muscles. 

Never heard of them before but I called with my sister in law on my way home and boy was I surprised that she knew of them. Not only that but she has been unable to work for about 20 years because of damaged rotator cuff muscles. She had surgery but it was unsuccessful and her pain is quite bad..

As for the low haemaglobin level, , when I was discovered to have Haemachromatosis, my ferritin level was round about 1100, the 'normal'  level is 50, so the treatment is blood removal (venesections) and after 6 or 7 weekly venesections I collapsed one night and was taken to hospital, my haemaglobin level was 82. My ferritin (iron) level now is somewhere about 600 but it's not being treated for obvious reasons but my Haematologist says my body is using it like a reserve lake. The Haemachromatosis discovery led to finding out I have bone marrow cancer because my body should have been replacing the haemaglobin. So for me to receive a bag of blood regularly will bounce up my ferritin level which means that iron will be added to what I already have in major organs like the liver, leading to cirrhosis, or heart, leading to sudden cardiac arrest. Joints become so painful also, no wonder it's nicknamed The Celtic Curse. I'm between a rock and a hard place. Johnty, I appreciate your contribution considering your current status.

I am thankful for your hugs ladies but please form an orderly queue, lol  Just to show political correctness, Gragon if you're interested mate you can be first  I can't be that ill, I've still got my sense of humour!

Take care everyone

Tvman xx

Dear tvman

or should I call you the professor, you’ve reminded me how complicated blood cancers are to treat and yours in particular sounds like a fine balancing act. I hope you feel you are being well monitored as I know that this helps give us peace of mind during episodes of instability. Hang on in there and try to stay out of trouble!

Hi

You don't have Haemachromatosis, do you? It appears that there are at least 2 mutated chromosome genes that can cause haemachromatosis or iron overload, C282Y and H63D. Of the two, it is rare for H63D to cause haemachromatosis. Guess which one I have? Yep, the latter. 

When I was diagnosed with haemachromatosis, I was told that I was very young to have it (I was 55.or 56) There's a UK Support Group which I joined and I get a 3 monthly magazine sent to me. There's a sheet supplied to fill in various blood counts. I knew from reading up on it that it's hereditary, caused by either of two genes so when I was at the cancer unit one time I thought I'd ask which gene I had and I was told it was H63D, so on my return home I wrote it down on a blackboard in the kitchen so I would never forget it. If it hadn't been for a routine blood test I wouldn't have found out that I had a high iron content in my blood and in turn my Haematologist wouldn't have discovered my bone marrow cancer.

All chance discoveries! Am I lucky?

Tvman xx

Dear tvman

i have a blood cancer called primary plasma cell leukemia it’s extremely rare, one person per one million of the population, it’s a mixture of multiple myeloma and leukemia.

Getting a diagnosis for any blood cancer is notoriously difficult, it’s been proven you have to attend your gp many more times than if you had a solid tumour cancer, and many times it is detected by a random blood test, so in some respects you were lucky as your diagnosis could have been delayed. My gp didn’t diagnose me despite only having 4 % kidney function caused by the cancer, it was all done in accident and emergency which is quite common in cases of blood cancer.

the good thing is once you get a diagnosis treatments are the best they have ever been, and the interest by drug companies in blood cancer is at a all time high, so there is much to be hopeful about for the majority of patients. I think the hardest thing is adjusting your mind to accommodate the uncertainty of having a blood cancer, but if you build a good support network around you of friends, family, the forum and other support groups, it's enough to lift you up during the down days.  

Dear Jane and Tvman

You’re absolutely right about how difficult it is to get a blood cancer diagnosis. In my case I had been having issues with infections and low white blood cell counts for probably around a decade. It wasn’t until I moved to a different part of the country that my MDS was finally diagnosed and the timing was perfect as I had the support network in place when I developed further serious infections including sepsis. With my MDS the neutrophils are the issue but are being effectively managed at the moment with GCSF infections, being scrupulous about hygiene and being careful about what I eat. I have a great medical team who support my clinical issues but as you say Jane the support that’s available through this community is also invaluable. 

Dear

it’s good to hear you are now in safe hands and feeling supported from a medical point of view. From what I know MDS is a very complex blood cancer, I’ve met people at my clinic who have been deemed low risk and high risk and have had donor stem cell transplants, so the sooner you get diagnosed and put in the right category the better. I have come to the conclusion that relying on diagnosis via the general practitioner is not enough and yearly blood tests might be necessary in certain age groups as the median age for mds is 71 and multiple myeloma 70, this might not be practical but given the evidence of late diagnosis we need to start somewhere.

Dear Jane

I totally agree with you about this. I was 53 when I was diagnosed in 2018 but looking back I think if a BMB had been carried out in much sooner it could have been picked up much earlier. Different regions have different approaches so this adds to further inconsistencies as well. It has been interesting observing as both a patient and a scientist/engineer how things the medical profession approaches problem solving and analysis (which is what diagnosis is effectively) compared to how my discipline would. Anyway I have a greatteam now who have my full confidence who see me envy 6-12 weeks and certainly know what they’re doing. 

Hi

Good to hear from you again, have I said to you before about the MDS Support Group? I think when I get my next magazine I'll write in with my story and give the Community some exposure.

I'll have to look up GCSF injections, I give myself a weekly Aranesp injection to try to improve my red cells (haemaglobin) but it's clearly not as effective as it was, maybe I'll receive a higher dose. They're keeping an eye on my blood, once a week, which is good so if I dip any further, action can be taken.

Try to keep positive, prof, and take precautions regarding crowds and shopping centres etc. I'm speaking to someone who is well aware of how to react to a situation, I know. Keep as well as you can my friend.

Tvman

Deartvman, I also take aranesp 100mcg and GCSF once a week. The aranesp has done a good job of keeping my red blood cell count up over the last 19 months and the gcsf helped prevent me from becoming neutropenic. I would definitely discuss your aranesp dosage next time you see your consultant as it has several different dosage levels.